Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: A Living Tribute - Restored (Read 3641 times)

I am returning this post, with my apologies, for not referencing the work of Mark S. King, which inspired this post. While they are not only, my words, they reflect my beliefs.

The 25th Anniversary of the HIV pandemic has brought back many memories. While almost all of them are somehow painful, they still represent a historic chronology of people who demonstrated the power of the human spirit, in dealing with a disease that was essentially unknown, had no treatment and generally resulted in the demise of almost all who contracted it. As I reflect on the past, I feel it important to share some of my recollections, so that newcomers can learn our history and to insure that we will never forget.

In the early 1980’s, or the beginning, there was nothing more than death and carnage as HIV infection cut a wide swath through gay communities. Something was killing our friends and we were powerless to stop it. However, there are people, who displayed incredible courage then, in those early worst years of the AIDS crisis. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward, grief subsided and lives moved on.

However, make no mistake; there are heroes among us right now.

There are remarkable people here, who showed astonishing courage and leadership, who summoned those forces and survived. People who refused to yield and many went so far as to stage "die-ins" to shame our government into action. They lobbied for treatment and services, got accelerated approval for anti-HIV drugs and formed the first AIDS Service Organizations. A time when countless people stepped forward, who were able to incorporate our needs, into direct actions to provide what our community needed most.

There are those who would don the required gown, mask and gloves to feed AIDS patients, housed in negative-pressure rooms. The linens and food tray, left outside the door, because even the staff avoided entering the room unless necessary. There were those who held dozens of hands, as their friends shed their earthly bonds. Some of them buried their lovers, often helping to hasten their demise, by hoarding pills for overdosing or through whatever means were available.

There were AIDS Buddies to help those in their final days. Food banks, clothes closets, delivered-meals and support groups. There were the problems of keeping an ASO board of directors full, when members kept dying each month. We cared for each other, attempting in our own feeble way, to stem the deaths and loss of our friends. It was a time, when often the only world that felt safe, was when surrounded by poz people, and for many, they were your only friends and family.

A time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. The instructions on what should be included in your panel for the AIDS Quilt. A time when each ring of your phone, sent chills up your spine. When attending support groups were always a challenge, because you would see who did not survive from the previous week.

A time when people shot themselves, overdosed and jumped off bridges when they got their test results. When memorial services, honoring multiple friends would be required, because there were not enough churches in which to honor the dead. Many churches flatly refused to allow memorials for AIDS patients. A time, when most funeral homes would not even consider accepting an AIDS patient, for a memorial and burial because they did not want to risk “contamination”. A horrible time, measured by the grotesque human costs, but also in the loss of our lost dignity, which forced us to beg to get help to bury our fallen comrades.

There was profound, shocking sadness here, amongst us all, but the years went by and HIV medicine got better, people stopped dying in droves and we found other lives to lead. Our sadness somehow seems a distant, dark dream.

Some of us who have “dodged the bullet” are beginning to reshape our lives. For once many of us we can finally make plans for the future. Nevertheless, there was a time when I knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. A time when our hospital Buddy list, would change twice daily, and we ran out of room, on our newly acquired plague honoring our dead, because the 300 nameplates lasted only a matter of months.

Brian tested positive in the early 1980s, shortly before I did. Yet only a few months after the devastating news, he agreed to facilitate an HIV support group. We regularly saw men join the group, get sick and die, often within months. All we could do is try to calm their fears, meet their needs and insure that they would not die alone.

Watching them disintegrate felt like previews of coming attractions. Brian though, was remarkable, a reassuring presence to everyone, and worked with the group for a couple of years, despite the emotional toll and the high body count. We found courage and fortitude that we did not know we possessed and compassion to ease our suffering.

It was a time that no one could prepare you for, because you cannot train to combat a pandemic. Nobody warned us of the emotional toll the carnage would demand. How burying your friends, for years on end, could erode or destroy your soul. How to deal with a world and country that refused to see and respond to this horrific plague: yet somehow we did, we persevered, we survived and are left to share the history.

Through this journey, I have learned a couple of things about myself. The first being: My most courageous self, the best man that I will ever be, lived 25 years ago during the first years of a horrific plague. I worked as a man possessed, alongside a million others who had no choice but to act. I secretly prayed to survive, even above the lives of others, my horrible prayer answered with the death of nearly everyone around me.

The second truth is that my experience has given me a glimpse into the full potential that we all possess to become more than we are. I have a better understanding of the horror of the Holocaust and plagues of the past, where you were forced to just stand there, powerless to act, as something took from you all that you loved, while secretly praying that your number would never be called. Somehow, even through the heartache, your instincts engaged, and if you were lucky, you survived and you moved on.

I suppose saying that I miss that brutal first decade would seem strange, but it would be partially true. I miss my friends terribly. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, and how I learned to offer help to those facing what terrified me the most. When I learned to reach beyond myself to help others and when I determined just how powerful my reach could be.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps even mundane. We are tired and just wanting to return to a quieter time. We have new lives in a world that is still choking on HIV, but fortunately, we are no longer powerless to counter this pandemic. We have adapted, survived and are prepared to meet the next 25 years.

Joe, this stunning, heart rendering, tear jerking and accurate account of the late '70's and '80's; once again proves how incredible and fulfilling our lives have been. I recall all of the things that I have accomplished since that first "Specialist" looked into my eyes in Sept. '83, and flatly stated that I should get my affairs in order, I wouldn't be seeing Christmas that year; and it brings a plethora of feelings, gushing through my mind.

Truly Joe, we have shared an amazing time, and only recently I have been overwhelmed with aging, and bringing my life to a natural ending. How impossible that really feels in my heart.

Only a few weeks ago, my HIV nurse and I were having a conversation about the possibility of what I would choose to do if my body was invaded by cancer. Both of us are now in our sixties and I looked at her and asked what she would do in that case. She smiled and stated with no emotion that she, like me, would not seek to fight the onset of cancer because she has seen so many struggle to win that fight, only to live a miserable existence afterwards. We decided that many of the current cancer survivors are strong and have tackled the disease early in its stages and in their own lives; however, few in the sixties have done so.

Anyway, I just find it interesting that now that I have survived this long, I have to face the incredible number of my family who have been attacked by cancer, and then I realize how incredibly lucky I am to be able to live long enough to have to even worry about the "C" word.

Isn't life amazing?

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

That's one of your best posts, Joe. To me, who was only 16 or so when this 'thing' started, it's hard to imagine what you guys have been through. I often wonder whether I would have wanted to be one of the first to pass before even knowing what was going on or to survive and see so many friends, lovers, and acquaintances die around me. In a lot of ways I think it's a blessing to have 'missed' that period. I think I do understand, to an extent, what you mean when you say that in a way you miss that time. It seems like there was so much to do, so much purpose and meaning. You're wrong about one thing, though; you guys (and gals) from the early days that are around today are still heroes as are those who weren't so fortunate. I've always said that I owe a lot, possibly my life, to those who fought so hard for research, treatment, and even just attention to the virus itself. Thanks.

I agree with the others Joe, a great post, you, Moffie and all the other LTS fought a long and hard battle that no-one though you would ever win back then, and even though it came at a cost you won, I will continue look to you all for guidance...you are my heroes and always will be.

Although I have never lost a loved one to HIV/AIDS, I nursed many of them in the 90's..and lost too many of them, and even though we were totally naive about HIV back then I still hated the way we ordered to segregated them and had to barrier nurse them..thank god those times have changed.

What an incredible post, Joe. What I have found, at least in my community, is that we used to band together more often back in the day, though of course more out of necessity. Sitting with people in their homes, assuring them they weren't losing their minds, when I wondered if I was losing mine. Two ASO's have dissolved since then, with one remaining. Many things have changed. We have survived.

Logged

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I agree with the others Joe, a great post, you, Moffie and all the other LTS fought a long and hard battle that no-one though you would ever win back then, and even though it came at a cost you won, I will continue look to you all for guidance...you are my heroes and always will be.

Although I have never lost a loved one to HIV/AIDS, I nursed many of them in the 90's..and lost too many of them, and even though we were totally naive about HIV back then I still hated the way we ordered to segregated them and had to barrier nurse them..thank god those times have changed.

Love alwaysJan

My post still applies, I don't need to delete, edit or change anything, Joe, and all the other LTS you are still my heroes...and it was still a great post.

Please give proper credit, and repost the original thought provoking story. The account of our history is to be shared with all PLWHA, regardless of authorship. As Peter said, whoever wrote most of it was just as talented with words as you are Joe, so please give proper references and repost it. Think how many who have viewed it and how many have read it's content and still don't give a damn who wrote it; only that it gives a powerful message for the present.

Thanks Joe, for being in the world and for having huge balls.

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Through this journey, I have learned a couple of things about myself. The first being: My most courageous self, the best man that I will ever be, lived 25 years ago during the first years of a horrific plague. I worked as a man possessed, alongside a million others who had no choice but to act. I secretly prayed to survive, even above the lives of others, my horrible prayer answered with the death of nearly everyone around me.

This paragraph sums up exactly the way I feel; I prayed to survive, while all my friends and loved ones were dying around me. That "horrible" prayer was answered for me, and for several of us here. I still ask, almost daily, "why not me?" Why was I spared? It still hasn't been fully revealed to me, but I see it as a journey. All of you are a part of that journey.

love,Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Joe, your text is inspiring to those of us who were too young or too naive to understand what was going on around us at the time. Thank you! I never considered the possibility that I would be a POW in this struggle way back then when AIDS was merely a small blog in the evening newscast but yet, here I am and can only hope that I have the courage to endure as so many on here have done. Thank you again.

Thank you Joe, you made me stop and remember. It was hard but it has given me a chance to think about what i saw and heard back then. I also remember the group meetings and wanting to go every week but was afraid who wouldon't be there. I too prayed every day to live and some how i made it so far. In the past few yrs i have dwelled on giving up but this morning i woke up and i felt different, i know now after reading your post that i have to start living again, i have been just sitting by and letting the world go by me. I can't do that any more, it wouldn't be right to all the ones that have left this world and who worked so hard to give me the help and meds i need now to keep living.Thank you, you are a wonderful person.

My thanks to you all and I know that each of us, can find ourselves in those words. No matter what your age, if you are here, you are a survivor of HIV and all suffer the impact of HIV, in our own ways. When I used the term "Hero", to me, it implies hero, the superman kind, but one in which he had nothing to do with his having superhuman powers. I feel the same way. Somehow, I survived and by doing so, I became a hero, because I represented the hope that we so desperately needed. It was not what I could do, it was what I represented. Thousands of us, became heroes, by some miracle of fate and we did what we could to support our community.

Sometimes, I become violently ill, when I really remember, how it was in those early years. I merely present a story, written by thousands and populated with incredible humanity. All of us are impacted by HIV, but hope must always remain. It is important that we remember our history, because that history has built an entirely new segment of society: the HIV community. In a way, it is humbling to be faced with the prospect that our reach is finite. There are simply some things we cannot fix. Yet, even when faced with such horror, the fact that so many heroes stepped forward, is the most humbling of all. Those who seek the true face of humanity, need look no further, than their nearest poz friend or lover.

We have built something great, upon the graves of untold millions. We all should be proud, of what we have built, and in that regard, I believe that we all are heroes. As Spiderman was told: "With great power, comes great responsibility". We have faced our challenges and each of us, remains a hero, who use their power, for the good of others.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps even mundane.

Lest anyone forget, though the situation has greatly improved since the late 80s and early 90s, for some of us those horrors still continue today.

Just 6 months ago, the sign outside my late partner's hospital room was requiring gowns and masks to be worn, while his food tray was left just inside the door. Though these precautions were taken for his benefit (to not jeopardize his tenuous health by exposing him to any further illness), it was a notice that I ignored because it reminded me too much of those "bad times" back when my first partner was hospitalized before passing away from AIDS in 1994.

Though I am pleased with my latest stable counts, having recently lost a second long-term parnter leaves me, like others have mentioned here (wink Alan), wondering why I have been one to survive. (But having been hospitalized twice myself, I didn't survive unscathed, that's for sure.) Though I'm still kicking around today, all my old friends, and now two partners, are gone; so for me, AIDS has been, and still is, a very current, life-altering, life-threathening, terminal disease.

As World AIDS Day is approaching, I am terribly saddened to find that, though 20 yrs. have passed since the first one I attended, I still have memorial services to go to in remembrance of those who have passed away from AIDS - in just this last year. The past, spoken of in this thread and that I lived through, doesn't seem that distant to me.